Family Caregiver Alliance - Cancerhttps://www.caregiver.org/health-issue-or-illness/cancer
enThe Trouble with Hopehttps://www.caregiver.org/trouble-with-hope
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by husband caregiver, John Ptacek</div></div></div><div class="field field-name-field-image field-type-image field-label-hidden"><div class="field-items"><div class="field-item even"><img typeof="foaf:Image" src="https://www.caregiver.org/sites/caregiver.org/files/John_and_Kitty_crop1.jpg" width="650" height="250" /></div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>I had a strained relationship with hope before my wife was diagnosed with cancer. To me, hope was a high waiting for a low, a fix with a nasty flipside. Far from the precious entity exalted by legions of poets and philosophers, hope was just another coordinate on the pain/pleasure cycle existing in infinite balance with its opposite. In the same way that happiness alternates with sadness, or desire with loss, hope alternates with fear. One requires that the other exist. Hope was for suckers, and I was no sucker.</p>
<p>Or so I reasoned. The times I didn’t need hope, that is. But when life would clobber me over the head with misfortune, there I was, clinging to hope like a dear, misunderstood friend.</p>
<p>Since my wife’s diagnosis, however, my relationship with hope is no longer strained. It’s been severed completely. I’ve abandoned hope, and in the process have met a new friend: peace.</p>
<p>To abandon hope is to trample the plotline of feel-good movies, to renounce the rhetoric of sweating preachers, and to earn puzzled looks from hopers everywhere. Hope soothes and inspires. It builds churches and sells books. Hope is widely thought to be the last coin in our pocket, the one thing we can never afford to lose. </p>
<p><em>But what is hope, exactly? What does it look like away from the flickering glow of votive candles?</em></p>
<p><em>Isn’t hope just wishful thinking? Isn’t it just slapping a happy ending on an unhappy beginning?</em></p>
<p>We want to be happy all the time, and why not? It beats sad, lonely, and a host of other unpleasant but inevitable human conditions. When we’re not happy, we hope. We paint a bright future with our thoughts and wait for it to materialize. However rickety, this logic makes just enough sense to ease a frightened mind. </p>
<p>Implicit in hopeful thinking is the mistaken notion that we are separate entities existing outside the flow of an exquisitely connected universe, that we are as in control of our destinies as we are our individual retirement accounts. Hope is our silent prayer that misfortune is meant for one of the other six and a half billion people in the world, but not us.</p>
<p>In small doses, hope is not toxic. It only nips or stings. When our home team loses, when no one asks us to dance, when we tear up lottery tickets, our hopes are dashed and we’re left to survey the space between our expectations and reality. That space grows into an abyss for those attempting to stall reality with hopeful thoughts during times of peril. Thoughts eventually dissolve, while reality stands pat. We blink, and it’s still there. Rays of hope meant to banish our darkest fears in the end only illuminate them, and we crumple into a state of surrender. Anyway, I did.</p>
<p>Surrender was where I stumbled into peace. I didn’t give up on life, I just stopped trying to outwit it. Surrender meant discarding the idea that life is always supposed to be wonderful; it’s just supposed to be life. </p>
<p>Time spent hoping for happier days is time spent turning away from life in its infinite poses of glory: the elegant curve of my wife’s newly hairless head, the game smile poking through her fatigued expression, the mountain of get well cards rising above a sea of orange pill bottles. Beauty borne from tragedy acquires a sacred dimension that can only be witnessed by a surrendered mind, a mind that isn’t chasing after the next happy face moment. </p>
<p>To picture my wife with hair again, to imagine her digging in the garden or strutting back off to work, is to add time where none is needed, to ignore the beauty right under my nose, and to allow futile hope to intrude on an otherwise peaceful day. </p>
<p><em>[John now volunteers as a driver for ACS taking cancer patients to and from treatments.]</em></p>
<p><img alt="" src="https://www.caregiver.org/sites/caregiver.org/files/John_and_Kitty_crop2.jpg" style="height:250px; width:650px" /></p>
</div></div></div><div class="field field-name-field-progression-of-care field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Progression of Care: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/progression-care/caregiving-advanced-illness" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Caregiving with Advanced Illness</a></li><li class="taxonomy-term-reference-1"><a href="/progression-care/post-caregiving" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Post-Caregiving</a></li></ul></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li></ul></div><div class="field field-name-field-caregiver-roles field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Caregiver Roles: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/caregiver-roles/primary-caregivers" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Primary Caregivers</a></li></ul></div><div class="field field-name-field-special-topics field-type-taxonomy-term-reference field-label-hidden clearfix"><ul class="links"><li class="taxonomy-term-reference-0"><a href="/special-topics/caregiver-wisdom" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Caregiver Wisdom</a></li></ul></div>Wed, 03 Sep 2014 20:07:09 +0000Anonymous22900 at https://www.caregiver.orghttps://www.caregiver.org/trouble-with-hope#commentsIt Beats You Down, Burns You Out, Worries You to Death, and Never Stops https://www.caregiver.org/it-beats-you-down-burns-you-out-worries-you-death-and-never-stops
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by Camille Hyatt ( Monroeville)</div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><em>Hello everyone! I am new to this site but not new to caregiving. This may be a little long, but I encourage you to read it. I encourage you because I know that you can relate to everything that I am going to say.....</em></p>
<p>I've been taking care of my husband for 20 years now, worked full-time as a legal assistant and raised three wonderful children who are ages 20, 22 and 23. JUST HOW DO WE DO IT ALL? I believe you do what you have to do when you have to do it. You get through it. You have to. Someone's life depends on it. Your family's life depends on it. That's a whole lot of pressure!</p>
<p>My husband contracted Hep C in Vietnam, then 20 years later he went into liver failure, followed by a liver transplant, then a kidney transplant, then throat cancer and two more surgeries, a mini stroke resulting in seizures, then a serious car accident as a result of a seizure while driving, necrosis of hip, fractured vertebra (more surgery), diabetes . . . and everything in between. He is on so many meds it is hard to count—including some heavy duty morphine. He has now developed demetia from the seizures.</p>
<p>We surely have been through a lot together—not just him—but me and my children as well. They were 1, 2 and 3 years old when it all started. At the very beginning of his health issues, I would sit at the hospital and listen to other patients tell me that their spouse had left them because of their health. You know, at the time, I just didn't get it. Why would someone just get up and leave their loved one (spouse) when they needed them most? Well, now I know. They either (a) just couldn't handle the "burden" or (b) were being selfish. We don't have to do this. We can just walk away. Right? But how can you live with yourself? I know I couldn't. And here I am, 20 years later, stressed out, burned out, overwhelmed just as much—or more—than I was at the beginning. But I know one thing: my husband is also here, spending time with our children and me. It may not be the best quality of life time but he is still with us. And that, I am very thankful for!</p>
<p>I've found out one thing—really, a lot of things about caregiving. Caregiving is one of the most (if not <em>the</em> most), stressful "jobs" on this earth. It is an emotional roller coaster. It beats you down, burns you out, worries you to death, and never stops. It can be very depressing, it makes you angry and resentful. It is totally overwhelming, from beginning to end. It changes your whole world, your life. Especially if it is your spouse. You start losing your best friend, your soul mate, your lover, your husband, the man you used to know. You start losing yourself. And yet, it never ends - this roller coaster of a life. I have a quote that I found and try to abide by it. It goes like this: "Wake up each day and be thankful for all of the good things in your life; concentrate on the positive, not the negative; and this will get you through even your worst days."</p>
<p>I am hoping that this "quote" helps some of you out there as well. We all have a big responsibility on our shoulders but yet we don't walk away. We all should be very proud of ourselves! We have basically given up most of our hopes and dreams that we had with our spouses in "growing old together." We have basically given up our lives to "care" and to "fight" for someone else's life . . . and that should be rewarding in and of itself! So, you see, despite all the ups and downs of this roller coaster we are on, it truly can be a rewarding experience. My husband is living proof of it!!</p>
</div></div></div><div class="field field-name-field-progression-of-care field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Progression of Care: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/progression-care/caregiving-advanced-illness" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Caregiving with Advanced Illness</a></li></ul></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li><li class="taxonomy-term-reference-1"><a href="/health-issue-or-illness/dementia" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Dementia</a></li><li class="taxonomy-term-reference-2"><a href="/health-issue-or-illness/stroke" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Stroke</a></li></ul></div>Sat, 01 Feb 2014 02:38:18 +0000Anonymous22219 at https://www.caregiver.orghttps://www.caregiver.org/it-beats-you-down-burns-you-out-worries-you-death-and-never-stops#commentsDidn't Choose to Be a Caregiver, But Cancer Never Gives Us Any Choicehttps://www.caregiver.org/didnt-choose-be-caregiver-cancer-never-gives-us-any-choice
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by anonymous caregiver</div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>I am the only daughter (age 46) of my parents (ages 68 and 66, dad and mom), and my mom was diagnosed with stage 4 uterine/cervical cancer out of the blue. She was in the best shape of her life, and she and Dad were about to visit Nepal as they were enjoying their retirement together. My husband and I were living in another part of the country when she got her diagnosis, and my life turned upside down. I had just moved with my husband to take a new job ( for me) in the Northwest after living 20 years in the Midwest. When we were seeking a life change, it seems that cancer was going to be the thing that would change us and throw things into a tailspin.</p>
<p>I am very close to my parents, and after traveling two years across country to help Mom with her treatments and related emergencies (major hospitalization after the cancer spread to her leg bone and caused a break), the distance was too much to handle. We decided temporarily to move to where they live and take a year of unpaid leave from my job after finding that even FMLA leave was not enough at this time and in this situation where I am a primary caregiver along with my dad. The cancer has continued to spread despite treatments, and at this time of writing, she is still doing okay despite many setbacks and an uncertain future. I did not choose to be a caregiver . . . but then, cancer never gives us any choices.</p>
</div></div></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li></ul></div><div class="field field-name-field-caregiver-roles field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Caregiver Roles: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/caregiver-roles/primary-caregivers" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Primary Caregivers</a></li></ul></div>Fri, 31 Jan 2014 20:39:59 +0000Anonymous22218 at https://www.caregiver.orghttps://www.caregiver.org/didnt-choose-be-caregiver-cancer-never-gives-us-any-choice#commentsTelephone Support for Caregivers of Patients with Cancerhttps://www.caregiver.org/telephone-support-caregivers-patients-cancer
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><strong>Citation</strong> Walsh, S., M., &amp; Schmidt, L. A. (2003). Telephone support for caregivers of patients with cancer. <i>Cancer Nursing</i>, 26(6), 448-453.</p>
<p><strong>Design</strong> Study</p>
<p><strong>Purpose</strong> The purpose of this study was to determine the feasibility of conducting a brief telephone intervention, Tele-Care II, for caregivers of hospice patients.</p>
<p><strong>Participants</strong> The participants were N = 14 caregivers of hospice patients (5 were able to complete the study).</p>
<p><strong>Outcome / Dependent Variables</strong> The variables of this study were caregiver burden as measured by the Caregiver Burden Scale, depression as measured by the Center for Epidemiological Studies-Depression instrument, social support as measured by the Inventory of Social Support, and a multidimensional scale (Hogan Grief Reactions Checklist-End of Life) that measures panic behavior, blame and anger, detachment, disorganization, and despair.</p>
<p><strong>Procedure</strong> The intervention was a 4-week modification of a longer 10-week intervention conducted for caregivers of patients with newly diagnosed cancer before the patients were eligible for hospice care. During each telephone session of the Tele-Care II intervention, caregivers and the nurse interventionist used a Tele-Care II workbook, which included weekly outlines of topics and contained information related to end-of-life (EOL) and palliative care. The workbook (S. Walsh, M. Rubert, unpublished data, 2000) had been conceptualized from an extensive review of the literature and recommendations from the <i>National Hospice Organization Guide to Hospice Care</i> 10 and the Institute of Medicine report, <i>Approaching Death: Committee on Care at the End of Life</i>.</p>
<p><strong>Outcomes</strong> Those completing the intervention experienced decreased depression, despair, and disorganization although the patient's condition became more serious. Late enrollment in hospice continues to be problematic for patients, family caregivers, and hospice staff because it allows little time for completion of interventions with family caregivers before the patient's death.</p>
<p><strong>Author</strong> Walsh, S., M., &amp; Schmidt, L. A</p>
</div></div></div><div class="field field-name-field-date field-type-datetime field-label-above"><div class="field-label">Date:&nbsp;</div><div class="field-items"><div class="field-item even"><span class="date-display-single" property="dc:date" datatype="xsd:dateTime" content="2014-01-21T00:00:00-08:00">Tuesday, January 21, 2014</span></div></div></div>Tue, 21 Jan 2014 21:21:30 +0000Anonymous22141 at https://www.caregiver.orghttps://www.caregiver.org/telephone-support-caregivers-patients-cancer#commentsEffects on Depressive Symptomatology of Caregivers of Cancer Patientshttps://www.caregiver.org/effects-depressive-symptomatology-caregivers-cancer-patients
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><h3>A randomized, controlled trial of patient/caregiver symptom control intervention. Effects on depressive symptomatology of caregivers of cancer patients.</h3>
<p><strong>Citation</strong> Kurtz, M. E., Kurtz, J. C., Given, C. W. &amp;Given, B. (2005). A randomized, controlled trial of patient/caregiver symptom control intervention. Effects on depressive symptomatology of caregivers of cancer patients. <i>Journal of Pain and Symptom Management</i>, 30(2), 112-122.</p>
<p><strong>Design</strong> Experiment.</p>
<p><strong>Purpose</strong> The purpose of this study was to investigate whether a clinical nursing intervention focusing on teaching family caregivers and their cancer patient skills to better manage the patient's symptoms would reduce caregiver depressive symptomatology.</p>
<p><strong>Participants</strong> The participants of this study were (N=237) patient/caregiver dyads randomly assigned to a 20-week experimental intervention group (n=118) or to a conventional care control group (n=119).</p>
<p><strong>Outcome / Dependent Variables</strong> Caregiver's depressive symptoms measured on the Center for Epidemiological Studies Depression Scale (CES-D).</p>
<p><strong>Procedure</strong> The treatment focused on assisting the patient and caregiver in managing patient symptoms and reducing emotional distress by administering 10 intervention (based on Bandura's cognitive behavioral framework) contacts (five in person and five over the telephone).</p>
<p><strong>Outcomes</strong> The findings of the study did not indicate that the clinical intervention was effective in decreasing caregiver depression over the 20 week course of the study. However, this article provides a insightful discussion on the complexities of caregiver depression.</p>
<p> Note: compare with the Dellasega, &amp; Zerbe (2002) article. Very little literature shows effectiveness of interventions (any interventions) on cg's depression.</p>
</div></div></div><div class="field field-name-field-date field-type-datetime field-label-above"><div class="field-label">Date:&nbsp;</div><div class="field-items"><div class="field-item even"><span class="date-display-single" property="dc:date" datatype="xsd:dateTime" content="2014-01-17T00:00:00-08:00">Friday, January 17, 2014</span></div></div></div>Fri, 17 Jan 2014 19:57:06 +0000Anonymous22123 at https://www.caregiver.orghttps://www.caregiver.org/effects-depressive-symptomatology-caregivers-cancer-patients#commentsThe Fearless Caregiverhttps://www.caregiver.org/fearless-caregiver
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by caregiver, Roland Foulkes (Ft. Lauderdale, FL)</div></div></div><div class="field field-name-field-image field-type-image field-label-hidden"><div class="field-items"><div class="field-item even"><img typeof="foaf:Image" src="https://www.caregiver.org/sites/caregiver.org/files/moms90th_10.2013_famPort.jpg" width="650" height="250" /></div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><em><span style="font-size:11px;">(above, left) <em><span style="font-size:11px;">My mother on her 90th birthday, October 3, 2013. </span>(</em>above, right) The entire Foulkes family - My mother (Clemonteese), my late father (Arthur) and me (Roland), taken in Christmas, December, 1987, six months after my father's diagnosis of, and surgery for, Metastatic Colon Cancer and six months prior to Arthur's death on May 18th, 1988. The black &amp; white inset photo is of our family in 1956 when I was six months old.</span></em></p>
<p>This year, 2013, has been a significant one for me and my family. On 18th May, we commemorated the 25th anniversary of my father’s home-going, memorializing his life with ads in our local papers. On 3rd October, and for the remainder of that month, we celebrated my mother’s 90th birthday. My status as their only child guaranteed my other status as the primary caregiver for both—for a period of 25 years.</p>
<p>Prior to this period, and oftentimes from great distances, I watched, learned, and assisted both my school-teacher mother and postal-worker father, together with their siblings, in the care for each set of <em>their</em> parents prior to their respective deaths between 1977 and 1992. During each of these periods, I was in different parts of the country and world: New York, Ghana, California, Botswana, and Florida. That knowledge of how to give care to aging parents was indeed powerful! <em>Knowledge is power</em> and I will add: “But, it is the application of that knowledge that empowers.”</p>
<p>Thus, it was not until I applied that knowledge that I became empowered in this “new” role. I learned not to take “NO” for an answer (from them at times and also from their medical providers). I demanded and received help from a variety of sources (our church, extended family, friends, colleagues, and social services agencies), and knew and understood the significance of taking care of myself first— through prayer and expanding my life-long relationship with God, knowing “I can do all things through Christ who strengthens me,” and also through my practice of Transcendental Meditation, a physical exercise program—all while volunteering, writing, public speaking, and spending as much time outdoors with friends and family as possible.</p>
<p>On Wednesday May 18th, 1988, as my father lay dying from the devastation of Metastatic Colon Cancer, floating in and out of consciousness, the last words he freed from his lips were, “Roland, son, take care of your mother.” It seems as if he saw her—our—future challenges with Alzheimer’s Dementia, Diabetes, and Hypertension, and wanted to prepare me for what was ahead.</p>
<p>In January 2006, in accord with my mother’s wishes, I said “No” to the medical folk who wanted to cease care for my mother who had clinically died on arrival to the emergency room. I demanded that they do all that was in their power to keep her alive, even in her fragile state, with multiple organ failure, and fortunately for both of us, she received the care needed to restore her to life and health. Today, in 2013, many of those same medical and nursing personnel call her a living miracle.</p>
<p>So, yes, I learned from each of my parents who and what a “Fearless Caregiver” was, should, ought, and must be. Eventually, perhaps somewhat reluctantly, I finally acknowledged, accepted and identified with the label "Caregiver." It is one that described all that I was, and had been doing for my mother over the past quarter century, and for my father before. I understood that I could “make a difference” both in the world at-large and in the care of my mother specifically. I saw, and continue to see my role as a member of Team Clemonteese Foulkes just as important, and as critical, if not more so, than all of her doctors, nurses, therapists, technicians, and insurers combined.</p>
</div></div></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/alzheimer%E2%80%99s-disease" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Alzheimer’s Disease</a></li><li class="taxonomy-term-reference-1"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li></ul></div><div class="field field-name-field-caregiver-roles field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Caregiver Roles: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/caregiver-roles/primary-caregivers" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Primary Caregivers</a></li></ul></div>Mon, 06 Jan 2014 02:12:33 +0000Anonymous22069 at https://www.caregiver.orghttps://www.caregiver.org/fearless-caregiver#commentsThe Value of Sharing What You've Learnedhttps://www.caregiver.org/value-sharing-what-youve-learned
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by Caregiver, Jeannie Gazzaniga</div></div></div><div class="field field-name-field-image field-type-image field-label-hidden"><div class="field-items"><div class="field-item even"><img typeof="foaf:Image" src="https://www.caregiver.org/sites/caregiver.org/files/Jeannie_Nasir_1.9.2014%20.jpg" width="650" height="250" /></div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>My husband has cancer. The disease and his treatments have dictated the last eleven years of our lives. He was diagnosed in 2002 with chronic lymphocytic leukemia, CLL, (a type of nonHodgkin’s lymphoma), usually considered an old man’s cancer. He was 39 at the time and a partner in one of the largest private gastroenterology medical groups in northern California. It was three weeks before our third child was born and a sweet time in our lives. Our other children were ages 4 and 7. After the initial treatments we had two good years with ‘no detectable disease.’</p>
<p>Since Labor Day 2007, when the lymphoma showed its ugly return, it’s been a brutal ride – no other way to describe it. We have endured 27 rounds of chemotherapy and the after effects, over 90 blood transfusions, full body radiation and its associated illnesses, four months of living away from our children during a stem cell transplant, middle of the night runs to the emergency room for stomach bleeds and unexplained fevers, a ten day coma from an infection, twelve leg surgeries to remove infected bone, walkers, wheelchairs, and reconfiguring our house to accommodate his treatment induced physical disabilities.</p>
<p>We have also felt the emotional sting that came when his medical practice group he helped create 13 years prior decided he was not partner worthy anymore. We’ve lost friends, we’ve rekindled old, we’ve made new, and we’ve felt the sadness when fellow transplant recipients did not survive. We’ve watched as my husband’s former patients, who would always exuberantly thank him for his medical care, stood speechless, shocked by his changed facial appearance due to the transplant induced graft versus host disease. We’ve overheard other’s ask, “What’s wrong with him?” and then had to explain to our youngest why they ask. Many people have told us we must share our story. I haven’t been so sure. It is personal, it is ours. Then recently a friend shared a few sentences from Annie Dillard’s book, The Writing Life. “The impulse to keep to yourself what you have learned is not only shameful, it is destructive. Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes.” [These words struck a deep place in my heart.]</p>
<p>I am a mom to two sons now ages 11 and 15 and a daughter 18, who keep me going each day with their inquisitive questions, dry humor, and smiles. I am also a dietitian, nutrition instructor at our local university, writer, and former national spokesperson for the world’s largest food and health professional organization – the Academy of Nutrition &amp; Dietetics. I chair committees for other national nutrition groups and have advanced degrees in nutrition and epidemiology. I’ve seen medicine from the inside out and from the outside looking in. I’ve studied the science. Pleaded with God. Bargained with emergency room administrators. Petitioned our state’s medical insurance board for denied lifesaving treatment. Laughed at the ironies. Embraced the unknown. Let go of control. Begged for peace. Through it all, I am learning that sometimes it is best to ride the horse the direction it is going.</p>
<p><em>Jeannie has been writing a blog about their experience as a young family living with cancer. It can be found at <a href="https://balancedlivingwithcancer.wordpress.com/" target="_blank">www.balancedlivingwithcancer.wordpress.com.</a></em></p>
</div></div></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li></ul></div><div class="field field-name-field-caregiver-roles field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Caregiver Roles: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/caregiver-roles/primary-caregivers" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Primary Caregivers</a></li></ul></div>Thu, 05 Dec 2013 09:12:35 +0000Anonymous20028 at https://www.caregiver.orghttps://www.caregiver.org/value-sharing-what-youve-learned#commentsThe Importance of Self-Carehttps://www.caregiver.org/importance-self-care
<div class="field field-name-field-author field-type-text field-label-hidden"><div class="field-items"><div class="field-item even">by caregiver, Nick Kidawski (Loveland, CO)</div></div></div><div class="field field-name-field-image field-type-image field-label-hidden"><div class="field-items"><div class="field-item even"><img typeof="foaf:Image" src="https://www.caregiver.org/sites/caregiver.org/files/nickKidawski_mom_2.13.jpg" width="650" height="250" /></div></div></div><div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>“I have uterine cancer.” These were the words my mother spoke to me as I stood in the doorway of her bedroom in disbelief and shock. At first I thought she wasn’t serious. Maybe the tests had revealed a mistake. Maybe the lab results got switched with someone else. That day in 2010 shook my world and during the next two years I would understand what it would be like to take on the role of a caregiver. I would be tested physically, mentally, emotionally, and spiritually. I would be thrust into the world of doctor’s appointments, waiting rooms, chemotherapy, radiation, blood draws, lab results, emergency rooms, conventional and complimentary medicine and hospice care. I never saw this coming and I don’t think she did either.</p>
<p>At first she went the traditional healthcare route having surgery to remove some cancerous lymph nodes, perform a hysterectomy and later chemotherapy and radiation. It was very scary for me to see my mother start to lose weight, lose her hair and appetite and not have as much energy as she used to. During the night she laid in her bed suffering from the effects of the chemo as it caused sharp pain to shoot down her legs and into her feet. Working a full-time massage job 6 days a week, going to school to study Biodynamic Craniosacral Therapy, build my business on the side and then coming home to take care of her was a lot to handle. I don’t know how I kept it together.</p>
<p>After the rounds of chemo and radiation were finished she explored the field of complementary medicine receiving massage, lymphatic drainage, energy work, and taking herbs to strengthen her immune system and detox from the effects of the drugs. During this time I was so happy to see her start to feel better. Things were looking up. It was January of 2011.</p>
<p>It started off as what my mother thought was a small infection on her inner left thigh. After a few months of trying a few things, the doctor confirmed the uterine cancer had returned. My heart sank as I hugged my mother, tears streaming down her face. I assured her that I was there for her before and I would be there now. Little did I know, this time would lead me as a caregiver to burnout. It was at this point that I knew I need to re-connect with my body and spirit.</p>
<p>I started on a regular basis to receive Zen Shiatsu and Biodynamic Craniosacral Therapy sessions. Finances were tough, but I found the money every time knowing that this was something I had to do for myself. During these sessions I was able to slow down, breathe and really listen to what my body had been trying to tell me for the past year. As this happened nagging pain and tension in my body started to unwind, my thoughts started to calm down, and challenging emotions where greatly diminished or left completely.</p>
<p>After the session when I went back home to care for my mother I saw her in a new light. My heart opened again and I was deeply honored to care for her. I could do the simplest things as well as the complex with ease and joy. It was not that my mother had changed, but I had changed both physically and emotionally as a result of self-care. Eventually my mother’s condition worsened and I had to call hospice. On October 1st, 2012 at 9:00pm after a 2-year battle with uterine cancer, my mother peacefully passed away.</p>
<p><em>Nick is owner of Breath of Life Bodywork in Loveland, CO. </em></p>
</div></div></div><div class="field field-name-field-progression-of-care field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Progression of Care: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/progression-care/post-caregiving" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Post-Caregiving</a></li></ul></div><div class="field field-name-field-health-issue-or-illness field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Health Issue or Illness: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/health-issue-or-illness/cancer" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Cancer</a></li></ul></div><div class="field field-name-field-caregiver-roles field-type-taxonomy-term-reference field-label-above clearfix"><h3 class="field-label">Caregiver Roles: </h3><ul class="links"><li class="taxonomy-term-reference-0"><a href="/caregiver-roles/primary-caregivers" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Primary Caregivers</a></li></ul></div>Wed, 06 Nov 2013 00:48:30 +0000Anonymous3851 at https://www.caregiver.orghttps://www.caregiver.org/importance-self-care#comments